Ending Parkinson’s Disease: A Prescription for Action
By Ray Dorsey MD, Todd Sherer PhD, Michael S Okun MD and Bastiaan R Bloem MD Phd[i]
I was diagnosed with Parkinson’s disease (PD) in mid 2017 at the age of 57 and since then have not devoted much time to reading about the condition. Like many People with Parkinson’s (PwPs), the initial post-diagnosis period can be daunting and is frequently a denial phase. Being no exception in this regard, I spent little time trying to find out more about what the future could hold, the research that was being done, and the prospects there were for effective treatments or, even better, a cure (for which currently there is none). In late 2020 someone gave me this book and reading it was my first foray into acceptance.
As I read it, I found it a very accessible and informative book, well-written and edited, with a straight-forward structure. Based on increasing numbers, its underlying premise is that PD is the fastest growing neurological condition in the world and will soon result in a pandemic. The authors believe this is unavoidable as a result of a larger ageing population, ever increasing use of industrialised chemicals and the failure to ban those found to be harmful, and, surprisingly, a decrease in tobacco smoking.
The book makes the point that society rose to the challenge with illnesses like polio, HIV/AIDS, small-pox and breast cancer, and calls for a similar type and level of activism that was employed in the face of these illnesses to combat PD. It sounds an alarm that a pandemic is forthcoming unless action is now taken by all concerned.
The first part of the book describes pedagogically the debilitating condition itself, including in detail the three main factors that could be potential sources of Parkinson’s: environmental factors, usually chemical; head concussion/injury; and genetic disposition.
The second part of the book focuses on a proposed PACT for action that translates into:
- P – Preventing the disease and correspondingly underlining the urgency of banning certain pesticides, cleaning up contaminated sites, developing heathier lifestyles through diet, exercising, and through taking greater precautions in activities that involve a high risk of concussion (e.g. American football);
- A – Advocating or lobbying for public policies and resources (e.g. research funding investment in new therapies is lagging behind);
- C – Caring for those affected, where the team approach is emphasised including through the use of telemedicine, new models of health-care delivery (e.g. through ParkinsonNet – parkinsonnet.info), removing economic barriers to care (and treatments) and greater use of smart technologies; and
- T – Treating the condition with new and more effective therapies, including encouraging PwPs to be more involved in scientific research to ensure that new treatments result from effective two-way dialogues.
The third part of the book, A Prescription for Action (mentioned in the title), describes how an end could be put to Parkinson’s. This section proposes 25 concrete steps that should be taken to reduce the global effects of this debilitating condition. This part of the book concludes with several useful websites, ranging from those focused on research to those focused on exercising.
If I have any criticism it is perhaps that there is not a sufficient recognition or explanation of the apparent wide variations in the types and forms of the condition. This means that the areas of research are wide and varied from the brain to the gut and as a consequence the research funds available tend to be thinly spread. In my view it would be of paramount importance that the global scientific world pools its resources, shares research findings and through involvement of us (PwPs) focusses on the areas where research could have the greatest impact.
Overall, this is a very accessible book with over 800 references and many real-life stories, which has to be a must-read for anyone touched by or wishing to learn about this degenerative condition. The book sets an optimistic tone provided action is now taken, illustrating measures taken by the Netherlands which is now one of the few countries where PD is on the decline. It concludes that just as humans contributed to the rise of Parkinson’s, we can contribute to its eradication.
I am now in a phase which, due in large to this book, leans more strongly towards one of acceptance of the condition. It has become evident to me that a (disruptive) trigger is needed to reach the next phase of treatments and therapies. It is highly comforting that four leading experts in the field, who are donating the proceeds of the book to the cause, have come together to so compellingly make the case for change.
For those of us who are implicated, the message is clear: now is the time to act.
07 January 2021
Brendan is a member of the Dundee Research Interest Group and a PD Avenger
[i] Published by Public Affairs, March 2020; ISBN 9781541724525 (hardcover); endingPD.org